Giving Voice to Real Experiences

Post operative blues and the why me question

Three days after the op I realise I have to take control, if I leave it, nothing will happen. I phone the ward and ask them to check if the referral to the district nurse has been done. It hasn’t. I ask when I’ll get the results of the tests they’ve done on the tumour. That will depend on which clinic the results are ready for. Given the Christmas and New Year bank holidays are coming I realise it could be weeks. I get on the phone to the consultant’s secretary and ask her to make an appointment for me. She’s really sweet and fits me in for the clinic on New Year’s Eve. I wonder about people who don’t know they can do this, don’t know what to do, who wait and worry. I don’t trust that communication between hospital, surgeon, GP and district nurse will happen unless I make it happen.

After surgery, I rested a lot, taking in the love that surrounded me, and didn’t think too much about what was happening. I didn’t, at this stage, wonder what I’d done, why I’d got cancer. I didn’t really ask the why me question too much. Mainly because I knew the answer. I knew I was destined to be the one in ten as soon as I heard that statistic. It was a fair cop. I’d led an indulgent and hedonistic life. If someone had asked me when I was 20 whether I was worried about my future health I would have said no worries mate (living in Australia at the time), no worries, I’ll probably be dead before I’m 50 anyway. I was just turning 51 when I got diagnosed. Perhaps that was the thought that caused it.

I’d done all the things you weren’t supposed to do. I’d smoked on and off for most of my life, enjoyed drinking and eating too much, hadn’t exercised enough, led a stressed lifestyle, not had any kids, lived in a large polluted city, and exposed myself to one risk after another. To counter these thoughts, I reminded myself that other people who were loads healthier than me, who had done all the right things, also got cancer. They had more justification than I did to be asking why me? Later I was to learn that everyone has their theories about why people get cancer, and at various stages I would find myself believing one or the other notion. I hadn’t exercised enough, meditated enough, had eaten red meat and veg with pesticides on, had too many x-rays, not taken enough vitamins, drunk water out of the tap. There were many reasons for me to blame myself and to feel guilty but was this a good state for me to get into? How was this going to help me find my fighting spirit?

I’d been through a difficult time with Terry some years before I was diagnosed. We split up five years before, and the two years before that had been hell. I read about how long tumours take to grow and that we should think about what we were doing seven or eight years before we got a diagnosis. So it was all Terry’s fault. If only he hadn’t gone off the rails. That feels better than blaming myself.

People I told seemed to know the right things to say. No-one told me stories of people who they knew who’d died from breast cancer, instead they all told stories of women they knew who died from old age having survived breast cancer in their fifties. No-one turned away from me. No-one told me, or asked me, what I’d done to cause this (though that did happen later). Our culture abounds with images about people winning and losing battles with cancer – with the underlying theory that if only you are strong enough, brave enough, you can control this thing, you can beat it. I don’t buy it. Cancer is not in anyone’s control. Anyone can get it, and no-one can control it.

Yet –

“the language of blame and guilt runs like a subterranean current. We are not good enough, pure enough, vigilant enough or smart enough to protect ourselves. We think ‘if only….’ ”[1]

Others look at us and think they know why we got it, because we did something they didn’t do. Then they can carry on believing that they are protected, that they are in control.

“This is so shocking. I am so, so sorry to hear the news. I can only imagine your state of vulnerability and uncertainty. My first response is to think of you as you are to me – a healthy and strong person who I have every belief will respond brilliantly to this early intervention. But that is not to address your internal turmoil. I cannot be with you in that, but I am truly thinking of and with you, and holding intention for your complete wellness.”

How did this person know the right thing to say? So articulate, and there were more like this, new ones every day and cards, flowers, kind words. I feel very loved, and easily accept the notion that loving thoughts and prayers can make me well.

I set up an email group so that I can keep in touch with everyone without having to make loads of phone calls. Looking back on them I can’t believe how cheerful I was, and how needy, cracking jokes, wanting people to like me, to see my bravery, protecting them from my underlying fear and anger:

Email to friends & family December 20thHi allJust a quick one as my arm isn’t quite back in actionSurgery went well, but am very bruised and sore, especially my right arm. Had morphine in hospital but they only gave me paracetemol to come home with, which isn’t half as effective…. but has the advantage of not sending me to sleep and my dreams are less weird now!Didn’t like hospital much I had big problems with the bedpans and food. Glad to be in charge of both ends again now.I’m glad that I’m not on my own and grateful that Terry has a shopping habit: the house is already groaning with food and he hasn’t started buying food for Christmas yet! I’m well looked after and the house is warm and cosy and filled with flowers from all my lovely friends.I won’t know the results until the 31st, so I’ll let you know once I know what if any the next stages are.In the meantime, thanks for all your messages, cards and support, it really means a lot to me.

My breast is sore. I can hear a sloshing sound in there. I get on the phone to Jane (breast care nurse), who doesn’t know what it is but suggests I go back to the ward if I’m worried. I do, sit and wait in that lounge again for hours, the nurse thinks all is well and sends me home. The district nurse visits and she is good, supportive and practical, says it might be an infection. I go to my GP, she agrees and prescribes antibiotics. After I finish the course the breast’s still sore and slushy. I get sent back to the clinic where I was diagnosed (where Jane is based) and they put a needle in and take liquid out, something called a seroma, apparently quite common…(so why do I find out about it from an email buddy in Canada? Why didn’t Jane tell me I could go back to her clinic to get it sorted instead of being in pain for two weeks?) I also have a blood clot in there, though that’s nothing to worry about apparently. I have to go back again a few days later for more liquid to get taken away.

As well as being in physical pain I am struggling emotionally, though not letting on to many people, My dreams are filled with worries about work, with anxious thoughts about being vulnerable and strange beasts, in this dream an electric white mouse:

Diary 22nd December – DreamI was living in a new house, with an old woman, stuff needs doing to the house, the painting and decorating hasn’t been finished properly. When I came home from work the piano was playing and I realized it was the ghost of a little girl. I went into the room and it was dark in there. A little white mouse zoomed across the room and out of the door. Later I realized that the electric sockets could have caused the piano playing and maybe the mouse was an electrical ball of some sort. Terry was in the other bed and I was crying for him but he didn’t reply so I got scared and woke up

I wonder if the mouse is the cancer, zapping about the place, out of control, causing havoc and tears? does the house and the old woman represent me and my body, falling apart, needing renovation of some sort?

Diary 28th December – DreamI was on a training course with Mary and in the break she told me it was going to get heavy, and that it was going to go on for two or three days. She took my visitors badge off me and showed me where to hide. The course was going to be an experiential course about children in war zones. I was really grateful for Mary’s protection as I felt very vulnerableMy body has been in a war zone, been battered about and wounded, and my dearest friends (including Mary) have been like a shield holding me safe from the fear.

I’m slowly making some cancer friends too. My cousin puts me in touch with a friend of hers in Canada who is great, a few months ahead of me in this business. She becomes a lifeline for me. I find that I’ve joined a new network without realising it. My pilates teacher is especially concerned when I tell her why I can’t come to classes at the moment. It’s only later that I remember that she’s recovering from surgery for a brain tumour herself. Another friend of a friend becomes a closer friend by becoming my personal librarian, dropping off the perfect books for me to read. We talk about her experiences with her young son who had leukaemia… and I realise I’ve joined the cancer community. Another layer of denial strips off. Then the meeting with the consultant leaves me in no doubt: I have had cancer and though its now been removed the news is not all good:

Email to friends & family Dec 31stWe met with the consultant this morning. The good news is that the surgery was successful in removing the entire tumour and there was no sign of any growth of the cancer into the rest of the breast or into the lymph glands. However, it was a grade three cancer, which is the most serious form and means that the cancer cells are more aggressive and more likely to grow and spread rapidly.

I’m now being referred to an oncologist who I’ll see in 2/3 weeks time, who will talk with us about what the options are now. Chemotherapy, radiotherapy and hormone therapy are all to be considered, and though it sounds like we have some choice it depends on what they recommend and what level of risk I’m willing to tolerate, balancing that against the implications of any of the options. At the moment I’m glad to have a couple of weeks to get myself feeling stronger, to do more research, and to be ready with all the questions when we go for the appointment. I’m recovering well from the surgery, still a bit tired, and my armpit is still sore, with limited movement in my right arm, but I’m reassured that all is to be expected (including a strange sloshing sound in my breast where the lump used to be!). I’m going to take January off work and then make longer-term decisions depending on the next stage in the treatment….

At the moment I’m still taking in the news, writing factually, with all I know at the moment, guess the feelings will start to come out in the coming weeks /days / hours / minutes

Hope this doesn’t spoil anyone’s New Year celebrations and I hope to talk to you all soon

Again I get lots of lovely emails of support back, with gems like this from Mary:

Been thinking about you over the last couple of days and have now just read your e-mail….God!

Feel both relieved at good news and stunned by bad news so can only imagine how you are with it. I am e-mailing rather than phoning just now because it seems less intrusive and I’m thinking you might just want to gather yourself. However if you are open to telephone conversation, just let me know and if I don’t hear from you within another few days I will ring you anyway….it all feels like some strange difficult scary terrain that you are crossing.. all the more so because of all that is unknown about what to do for the best….if there is anything I can do to support you in it please let me know…

I realize that this is indeed a time of ‘gathering myself’. I am slowly letting the implications sink in of what I’m being told… a lot of time off work? hair loss? sickness? cancer already spread? It is indeed a very scary terrain especially for someone like me who likes to be in control, likes planning and knowing where she’s going. I’m starting to make sense of it all, but there’s still a part of me that doesn’t believe it’s happening. Our dear friend Chris, who is ill with kidney cancer said “denial is a much undervalued coping strategy” She’s right, I feel in a very strange state, part of me still isn’t letting it in, even as I contemplate the next steps which will be even more scary than surgery was. I sink back into that cosy resting place and wait for the oncology appointment to come through.

I know now I will be taking a longer period of time off work than I originally imagined. A dream shows my subconscious working away trying to tie down this beast that has invaded my body and soul:

Diary 4th January – DreamI was at work but couldn’t find the people I was supposed to be meeting. When I did meet up with Richard he told me how I got that pain in my foot. We don’t go back to the meeting but go for a walk instead. Walking down a road there’s a camel which needs to be caught and controlled. I decide to let the men do that job, they’re much better at it than me. Then we had to go through these complicated security doors with the camel all trussed up. My handbag and suitcase have to go into the security system. I started to get anxious that we hadn’t had the meeting and I was really worried that maybe I’d lost my handbag and suitcase. Anne was joking with me that I wouldn’t be able to go to meetings any more without them. Though she was joking I knew it was true.

This dream seemed to me to be about not being at work, about something big (like a camel!) getting in the way of me working and not being able to go to meetings any more, or if I did not having my bags with me would leave me less capable. Some psychoanalysts would say that the handbag and suitcase represent identity – and losing them and / or my shoes became a theme in my dreams over the coming months and years. Having cancer came to be about more than just survival. Terry would often say “nothing will be the same again” and he was right, having cancer does change your life. At this point my dreams point to a fear of not just losing my life but losing my identity. If I am to survive it – who will I be then?